Thinking About Starting a Stroke Support Group? Emma Beesley's Advice — Do it!

Why are support groups important?

Stroke support groups give us social connections. Which is really important. Everyone in the group is supportive and understanding, and friendships are made. I really love my aphasia people. They get me and I get them. We share a mutual understanding.

I was very nervous about attending the support group for the first time. Normally, I'm outgoing, but after the stroke, that changed. When I arrived, the other members made a fuss over me. They were very welcoming. It was amazing.

Sometimes, after a stroke and aphasia, your existing friends drop by the wayside. It’s because they don’t know how to talk to you anymore. Some people need to move away from their homes for more support, to areas where they don't know anyone.

Making new connections and having people who are like you is really important. Whether you are young or old, it doesn’t matter. I have aphasia, and they have aphasia, so we share a connection.

How did you start the group?

Four founding members started the Aphasia Communication Group, and they are still with us. Originally, they were in an outpatient group attached to their speech therapy at the hospital. After those sessions ended, they wanted to keep meeting. So, they decided to start their own support group.

We meet every Friday from February to December. Our group is a hybrid style group. We have over 45 members attending in person and eight joining via Zoom. The group is inclusive – everyone is welcome, including carers, partners, and volunteers.

We get referrals from the local hospital, speech therapists, and other people with aphasia connections. The New South Wales Stroke Recovery Association and the Australian Aphasia Association provide our group details to people in the area looking for a communication group.

How did you find a good venue?

The group started in a small room at a local community centre. As we grew, we moved into the community centre's auditorium. When we outgrew that space, we approached a local Bowling Club and moved our group there.

The Bowling Club has an auditorium big enough for us. They have audio equipment we can use. We have a good partnership with the Bowling Club. They sponsor us for certain things, like our new shirts. The Bowling Club is very supportive and accepting of all people with aphasia. So, everyone can stay there and have lunch, and feel comfortable.

Are there guidelines or rules for your support group? Can you share how these were made?

The founders created a mission statement and group rules at the beginning. The rules are:

• What is said in the group stays in the group.

• Be patient with people.

• Give them time.

• Give them the opportunity to speak for themselves.

• Make a space for them to join in.

• Respect how much or how little someone wants to interact.

• Find out how people want to be helped.

• We use total communication in the group. Which means using any way possible to communicate, like speech, gestures, writing, pointing, drawing, facial expressions, communication books, pictures, maps, and more.

• Getting your message across is important, not how you do it.

What activities do you do in your support group? How do you meet your members’ communication needs?

Our members can buy tickets for $2 each. The winner gets to pick three songs to sing at next week's 3-minute exercise session. Half the money raised goes to the winner, and the other half pays for morning tea.

Our group meets for two hours. Every meeting, everyone with aphasia gets a turn reading from a selection of themed quotes aloud. Some quotes are hard, and some are easy. I walk around with a microphone, so everyone gets the opportunity to speak. Our secretary reads important correspondence. Then it’s time for people to share their news with the group if they want to.

Every second week a speech pathologist comes to us. We raise money for this through raffling off prizes at local markets and other community events. It’s good for our members because some of them can’t access speech therapy. We also have couple of university speech pathology students who happily volunteer their time as part of their degree. They run general exercises, speech activities and reading worksheets with us. The more able people, who are better at reading, communication and comprehension, will help the people that need help. And so do the carers or the volunteers.

We all help each other. The group is a safe space, free from judgement.

If you were talking to someone thinking about starting a group, what advice would you give them?

Do it!

There’s a lot of things you may need to think about before you start. You will need good support. A venue that is suitable for your group’s needs. You will need referrals from the local hospital or speech pathology services to find members.

There are different types of groups. You can make it a coffee group for people to chat, You can make it more structured like my group, which provides speech therapy for people who cannot afford it. You could sit in on an out-of-town group and observe how they do things.

There is help and guidelines available - link in with the Stroke Foundation, the Australian Aphasia Association, or the Stroke Recovery Association New South Wales.

Want to find a support group in your area? Support groups | enableme - stroke recovery and support